At the age of 17 Madi Cubley hoped that she would be focusing on her A-levels, spending time with her friends, and doing things a normal teenage girl would. But in 2018, she was diagnosed with an incurable liver disease that since then has had a huge impact on her life.
What her parents originally thought was a sickness bug after a holiday in 2017, turned out to be primary sclerosing cholangitis (PSC), an incurable disease that will result in her eventually needing a liver transplant.
Madi, of Tummel Way, Attleborough, said: "I was diagnosed right before my GSCEs and it was very difficult. I spent the majority of year 11 in and out of hospital. Now I am just really tired all of the time. They call it chronic fatigue so I have to nap a lot through the day.
"Now I'm trying to do my A-levels so I get stressed and I have moments when I feel really down because when I get home from school I have to go sleep. I struggle to do things other kids my age are doing and I miss out on a lot of things. I just want to be normal."
Typically a disease associated with middle-aged men, Madi's case is very rare and she has been suffering from memory loss, breathing problems, and recently collapsed whilst at hospital.
Dad Darren Cubley said: "We are having more investigations at the moment because she has different symptoms. We don't know if it is connected but she also has auto-immune hepatitis and colitis.
"Madi is having regular checks at the hospital so we can monitor how close she is to needing a transplant but PSC also makes her susceptible to bile duct and bowel cancer and she picks up illnesses really easily. It's hard because you don't want your child to go through things like that,"
Despite all of this, Madi, who attends Attleborough Academy Sixth Form, said she would not let it define her.
So far, she and her family have raised more than £4,000 for PSC support, Norfolk Liver Group and Norfolk and Norwich University Liver Research.
For their next fundraising event, they have organised a black tie charity ball at The Lenwade House Hotel, Saturday October 12 at 7pm, costing £45.
Madi said: "If they don't find a cure before I need a transplant, I'm still going to be happy, because it could be worse.
"I used to be scared about talking about it, I wouldn't even tell my friends. But now I am a lot more open and I think more people need to know about this disease."
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